Is is MS or am I reading too much?

[Marky J]

Last May I had a fever for about 5 days or more, and while I was in bed I got charlyhorses in my legs.  Because I was so tired, I didn't stand up to stretch them out, I just let them pass on their own.  They never found out what caused my fever, but after it was over, I noticed that my legs from my knees down felt as though I had been working out or running, there was weakness, but no "burn."

At first, it felt as though my calf muscles wanted to jump to the moon.  There was no spasms, but my legs felt as though they wanted to move faster from the knees down then from my hips to my knees.  During walks I noticed that I would have a tendency to trip and then I noticed tingling in my feet.  Over the next few weeks, my walking got worse and I eventually bought a cane to keep myself from the sensation of almost falling down.

I went to my doctor.  I'm type 2 diabetic so I was concerned.  Doctor gave me blood and urine tests and said that I wasn't in great control, but did not say it was neuropathy.  Since May, I have had a blood flow test on my legs (with several pressure cuffs), an electrode test on my legs and feet and an MRI.  All have come up okay.

Over the summer, I was convinced it was neuropathy and now I'm convinced it's a botched MS diagnosis.  I take what I read on line to heart and then get anxious.  Recently, my lower back started to have constant ache, but that cleared up around 10 days ago.  Even more recent, I've begun to have sudden bowel urges and constipation.  

Throughout this whole ordeal, I've suffered from ED, which nobody (after almost 5 months) has even adressed, besides me.  The doctor's attitude are "yeah, that'll happen."  I can get errections in my sleep, but sensations in my frenulum (sp?) are almost completely gone.

I'm bugging out and can't get answers fast enough to calm my spinning head.  Any insight would be appreciated.

[Marky J]

Hi, and thanks for the reply.  Upon reading the symptoms of Guillain-Barre Syndrome, I'm only hitting on 2 of the 5 major symptoms (Severe pain in the lower back and Difficulty with bladder control or intestinal functions).  I wouldn't call my back pain severe though.

To answer your questions, yes, it was a Nerve Conduction study I had.  The lab techs said their results didn't match the symptoms I was describing.  They said I was normal and, if anything, my nerves were a bit over sensitive.  As for my MRI, it was on my lumbar and back and it took about an hour or so.

Also, the weakness is equal in both legs, and it really hasn't increased any in about 90 days or so.  I can climb stairs on a scale of 7 out of 10 (likewise walking down stairs).  I can get up from a squat, but I'd better have a lot to hold on to.  I am 43 years old.  My hands and grip are fine and no, they haven't scheduled me for a neurologist.

Thanks again,
Marky J

[Quixotic1]

Hi, Welcome to the forum!   I am a retired physician with MS here on the forum.  As I read your post, I thought of the same thing Jazzy did.  A feverish "prodrome" (illness preceding some other event) has never been shown for MS, though there are reports of illnesses preceeding it.  However, What you describe sounds a lot like an infectious, autoimmune neurologic disorder.  Had it occurred and been improving with within 8 weeks or so, I would suspect something called Guillain-Barre Syndrome.  This is an autoimmune inflammation of the spinal cord following an infection such as Epstein Barr Virus (good call Jazzy!), or hepatitis, or a gastrointestinal bacterial infection called Camphylobacter jejuni  or a variety of other things, mostly viruses.  The GBS in it's fullest form is an ascending weakness (all the way up to a paralysis) that starts with the lower legs and progresses upward, involving the hips, the trunk and genito-urinary system.  this would include the ED.  Then the arms can be affected and finally the person's respiratory system may be paralyzed.  But GBS may not develop completely.  By definition it only lasts 8 weeks or less and then improvement begins.  Full recovery is usual, but not all have full recovery.

When the process lasts longer it may indicate a disorder that used to be considered the "chronic" form of Guillain-Barre Syndrome (but many researchers think it may be a separate disorder.)  This is called Chronic Inflammatory Demyelinating Polyneuropathy.  Usually the relationship of an initial infection is not so close in time with CIDP as you describe.  But, CIDP and Guillain-Barre are two of the forms of a process that attacks the myelin of the nerves - only they do it in the peripheral nervous system.  Multiple Sclerosis attacks the Central Nervous System (Brain and Spine).

The CIDP is diagnosed with an EMG (is that what you had with the "electrodes?")  and a Nerve Conduction Velocity Study NCS (or NVS).  This uses thin needles and electrical current.  Did you have this?

You had an MRI of what?  If it was of the lumbar spine, I'm glad it was normal, but that doesn't tell us anything about MS or CIDP.  If you haven't had it you need an MRI of your brain, cervical spine, and thoracic spine - all done with and without contrast.  And given the history of a feverish illness you very much need a spinal tap.  This would be used to diagnose MS, GBS, CIDP and other infections and inflammatory illnesses that can cause this sudden weakness of your legs.

Is the weakness pretty equal in both legs and has it increased in both legs equally?  How are you at climbing stairs now?  Can you squat and rise well?  How old are you?

You should also be tested for other infections that can cause neurologic problems - EBV, the "Mono" virus is one you need testing for.  Another is Lyme Disease.  It can present with a febrile illness, though immediate onset of weakness of the legs would be very unusual.  The tingling and numbness is more usual.

At this point I feel you need complete MRIs of your brain and spine, a spinal tap, and testing for neurologic infections.  Your story is not very characteristic for MS, though it remains in the running.  If you would answer some of my questions, I might have more ideas.

Do you feel you have full strength in hands (grip?) and arms?

I agree that it sounds like a form of neuropathy - either infectious or inflammatory.   Are you seeing a neurologist?

I'll be looking for your answers.  Quix

[Jazzyfizzle]

Hi Marky,
I have had several of the syptoms you describe (except the last one of course LOL) and I am a type 1 diabetic since 2003. Did they do the Emg on your legs to determine if it was the Neuropathy?
If you are also have problems with the digestive portion of your pancreas (the exocrine function) in addition to the Endocrine function, it will cause great disturbance in your bathroom habits, if you know what I mean. What type of numbers are you running?

I had the same type of fever apon returning home from a Dka. It turned out to be Epstein Barr virus and made itself at home and has stuck around for the long haul.

Take care
Jazzy

[grannyhotwheels]

I'm bumping you back up to the top so someone might can help you.  I'm sorry you are having this problem and I'll be praying for you.

Carol